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Threshold of Knowledge

Discussion in 'Action Alerts and Advocacy' started by Andrew, Feb 14, 2010.

  1. Andrew

    Andrew Senior Member

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    Los Angeles, USA
    I've spoken with a top progressive specialist in prostate cancer and a professor in a medical school urology department whose specialty is prostate cancer. Neither of them had heard of XMRV, even though the paper came out in 2006. IOW, even though it is gigantic news to us, it's more or less a sleeper in most places.

    So with this in mind, I emailed a CFS activist the other day about something we are discussing here, and he thanked me for information that was new to him.

    I guess what I'm saying is we all immerse ourselves in the latest happenings with CFS, they become common knowledge with us, and we assume that people on our side will automatically know. But they don't always know. And I'm not sure what to do about this. I don't want to become a pest telling them everything that comes up.

    Not sure what to do.
  2. George

    George Guest

    Really Good Point

    O.K. I think this is goin' to be a bit of ramble so skip if you're not up to convoluted thinking that's not your own. (grin)

    There are about 75,000 people in the U.S. on disability with CFS. There are around 250,000 who have been diagnosed with CFS. Now just working with those numbers not any of the millions and millions that get used when organizations are trying to get attention. Just these numbers. There are only around 5,000 and this is a realllllllllllly high, optimistic number of people who are on the web and looking for CFS information.

    Out of the 5,000 who are looking there are only around 3,500 patients registered with the various organizations (more if you count advocates). There are only 1,200 members here and my guess is that not all of them are patients and our numbers are from all around the world. So let's say about 700 to 800 US patients are registered on this board which is probably one of the most cutting edge up to date places available. Heck I think the scientist come here for info. (grins)

    So the edge (that's us) makes up less than 10% of the disabled and less than 3% of the CFS community in the US.

    Add to that the fact that doctors don't know anything that isn't handed to them from the AMA guidelines or a pamplet along with a drug sample from the local Pharma representative and we know way more about what's going on that 99 % of the rest of the world.

    So Andrew, Damn good question! Right now I don't even want my doctor to treat me. I don't even want to get into this conversation with him, it's not worth it and would only bruise his ego. I have enough problems without adding that one. (big grins) So in the medical part I'm just laying low.

    I've tried talking to a few relatives about what's going on but it's way to technical for them right now. Most conversations start out with basics like "what is a retrovirus?", "what is PCR?", "what is Science, is that like the discovery channel???". (big drooly grins)

    (chuckles) so I guess we got each other and that's about it for now. You are so right Andrew, the folks here are so ahead of the game we are part of making the game happen!
  3. Samuel

    Samuel Bedbound with NO DOCTOR

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    Excellent point.

    I will probably say more about this when I can.
  4. sarahg

    sarahg Admin Assistant

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    The sad fact is that this is universal across nearly all health problems. These are generalizations, there are certainly more explanations than this. But these are my observations from watching how other people with all sorts of conditions relate to their healthcare.

    Sometimes people want their doctor to find all the information and answers for them, and they expect they will not need to learn anything themselves, even from the sheets the doctor sends you home with. They believe their doctors will always have the most up to date info. "that's what I'm paying the doctor so much money for so why should I have to learn this?" -this is what my grandpa says.

    Sometimes because they are in denial about what is happening to them, that their bodies are not infallible and they will not be here forever. It's an uncomfortable reality to confront regardless of diagnosis. If they don't learn about it, if they don't do things actively to manage it, it's not there. I did this myself many times until I got this disease because I was sick very often throughout my childhood and convinced myself I would never be sick again, hated and avoided doctors like the plague.

    Or they push on and deny that anything is wrong because they have to- gotta make money, pay bills, no insurance, no doctor, no money, no choice. That works better in a lot of other illnesses than it does with this one. Or it works longer, not sure which.

    Other people will hear that there is nothing wrong or that something is normal once from one (or maybe a couple) doctors or nurses and just believe it must be. I went undiagnosed as having endometriosis for 11 years because of doctors who told me it was normal that I was passing out and vomiting violently from the pain of having my period, and that a variety of less severe symptoms were also normal. By the time I accepted that this was not normal there were endometrial growths on my left ureter and had they gone untreated a few years more I would have lost the use of my left kidney. Even with treatment, my left ovary is no longer kicking out eggs as the fallopian tube is too far gone.

    With the above possible roadblocks, it is certain that if something wrong enough or bad enough happens, one's attitude will change. It is possible that those of us that are here used to look at health and disease much differently than we do now. I know that to become a seeker of information myself I had to have the crap scared out of me by how bad I was feeling, and have an encounter with maybe the worst doctor ever to practice medicine. Actually 2 of the worst doctors. But I know I wasn't this proactive to begin with, far from it.

    Some people just don't have internet access and they read a lot of books instead. So we just don't know they are right there with us! I've only had steady internet access for about a year, but I was pretty well informed because of the books I'd read.

    Sadly, because of the special conditions of our disease there are people with ME/CFS who cannot expend the energy needed to learn and don't have anyone to help them. We have all been there for varied lengths of time- but the very fact that we are here (even if here is minutes at a time on a laptop on a couch and not that often) means that we should consider ourselves lucky.
  5. gracenote

    gracenote All shall be well . . .

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    Very well said, sarah.
  6. George... I think the figures are slightly different.
    From experience I know that of the people who read forums, only 5-10% will register.
    So that makes 10,000 - 20,000 fairly regular readers of this forum if 1,000 represents 5-10% of the lurkers out there.
    Still, even then it's a pretty low percentage of those 'in the know'.

    Andrew: After years and years of working with tech newbies, I reckon that it's much better to risk patronising somebody and getting flak for it, than to assume they know stuff which they may be ignorant of. Assuming they know stuff leads to big problems later.

    So... in my opinion... choose your most important bit of information for everybody out there to know, repeat repeat repeat until you are blue in the face and everybody knows you as 'the XMRV nut'. Because in my experience I have to say something 3 times before somebody learns it or starts to remember it. (OK so maybe I'm not a great communicator, but still...)

    Rachel xx
  7. Marco

    Marco Old blackguard

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    Very good points. Unfortuntely neither medical journals or special interest forums impact on the general public. Mass media are the only means of getting the message across to a wider audience.

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